A mother's secret strength

Coping with her child’s cancer

Jill S. Browning

8/31/09 2:41 PM

Life before cancer for the Johnsons was filled with vacations
together, corny jokes and mundane errands that doubled as family
outings. Life after cancer? Thankfully-and miraculously-it's pretty
much the same.

Downers Grove mom Kelly Johnson isn't one for drama, even when
her world is swarming in it. A slender, tall woman with thoughtful
eyes, she calmly remembers how she stood alone in an emergency room
and heard the news: her son Bobby, then 5, had a brain tumor the
size of his fist.

She lets only a solitary tear escape retelling her family's
story.

Few clues

Bobby's massive tumor was pressing against the part of the brain
that controls balance and gross motor skills. Stealth-like, it
revealed no hints of its presence until emergency surgery was
necessary. "The weekend before [surgery] we were at Waterfall Glen
and he was balancing on rocks and going across the creek there,"
Kelly remembers. "He shouldn't have been able to do that. There was
nothing showing. There were no headaches, vomiting or
anything."

His face revealed the first clue. Bobby had been in speech
therapy, but one day his therapist noticed part of his face
appeared droopy. He thought it could be Bell's Palsy, a facial
paralysis sometimes caused by a virus.

The pediatrician also thought it was most likely Bell's Palsy
and expected it to disappear. It didn't. Alarmed and wanting a
second opinion, the Johnsons made an appointment at Children's
Memorial Hospital.

The sinister tumor began to reveal itself the day before the
appointment.

Vomiting and a headache kept Bobby home from school. That night,
Kelly slept with her hand pressed down on Bobby's head, to soften
his pain. The next morning, she knew he was dehydrated and took him
into the emergency room at Good Samaritan Hospital in Downers
Grove. She still hoped to keep their appointment with the
neurologist.

But plans changed.

Bobby's neurological responses seemed strange to the ER doctor,
who ordered a CT scan. "That's where they saw the tumors," Kelly
says. "There was the large one … and basically what they call 'salt
and pepper.' " The finely dispersed, small tumors ran all the way
through his brain and spine.

"Thanksgiving" 2003

What should have been a time of gathering around the table with
turkey and the trimmings instead turned into a gathering in the
hospital with the Johnson family praying.

Bobby had been sent to Hope Children's Hospital in Oak Lawn
immediately after the ER visit to have his first surgery to remove
the large tumor, dubbed the "mother" of the other smaller tumors.
"Talk about putting your trust in people that are the experts,"
says Kelly, who commends the hospital's special brain tumor clinic
of oncologists, radiologists and surgeons.

Nothing prepared them for the inevitable goodbye to Bobby as he
was wheeled off into surgery.

More than ever, Kelly says she relied on her husband Bob for
support during those dark times. "Bob is so good at saying [to the
hospital staff], 'This is my child, he's now your child. I'm
placing my child in your hands, take him as you would take your
own,' " Kelly says quietly.

Lost ground

The changes in Bobby after surgery weren't immediate. In fact,
right after surgery Kelly remembers how Bobby feasted on macaroni
and cheese.

Hours later, however, as his brain readjusted to the lack of
pressure from the tumor, the consequences of surgery and the
unknowns started. "He basically couldn't sit up, he couldn't roll
over, he couldn't swallow, he couldn't talk," Kelly says. She says
the doctors warned her he might not be able to talk, but that he
would talk again.

His first word came three months later as they were returning
home from the hospital. The word was a loud "No" directed at his
younger brother, Liam. Kelly laughs now at how pleased she was to
hear the brothers bickering.

While the first surgery was a success, Bobby's cancer journey
was far from over. He endured multiple rounds of radiation and
chemotherapy. He had ports inserted to receive medicine more
easily, as well as feeding tubes since he couldn't swallow. One
eyelid was stitched down partially to protect his eye, since he
couldn't blink normally. He had ear tubes inserted to relieve sinus
congestion.

Kelly rattles off the list nonchalantly.

Bobby also had a second brain surgery, to remove a
suspicious-looking tumor. "In some ways it was more scary [than the
first surgery], because you're like, 'is he not going to be able to
talk when he comes out again, are we going to be totally back to
zero?' They don't have exact answers," Kelly says.

The tumor was non-cancerous.

While the scans on Bobby's brain have been clean since October
2004, he continues to work on regaining his speech and gross motor
skills. He has occupational, physical and speech therapy sessions
weekly and is supported in his second-grade classroom by an aide.
Bobby will be taking growth hormones, since the chemotherapy and
radiation decimated his pituitary gland's function.

Although Bobby has changed physically, he hasn't changed a bit
mentally, which was Kelly's largest concern. "He's still that
stubborn boy with his father's sense of humor and a sense of liking
this and liking that. He's still Bobby, and that's probably one of
the biggest blessings and biggest concerns answered-that he's still
that little boy that he was," she says.

Kelly is astonished by Bobby's determination and is inspired by
him. "At the beginning of the school year, I remember thinking 'I
wonder if there will ever be a point where he'll be able to walk to
school,' " says Kelly, who pushed him in a jogging stroller back
and forth to school in the fall. "Well, he's running home, with his
own little lopsided gait … from school now."

How did she cope during her family's ordeal? Kelly dismisses any
thoughts of personal courage and is quick to thank others: Family.
Friends. God.

Her four sisters and Bob's three sisters were fixtures at the
hospital, alongside her and Bob to watch over Bobby. Bob's mother
cared for Liam.

Friends also provided a source of strength, which frequently
came in the form of soup. "We didn't need meals for at least eight
months, it was crazy," Kelly says. "It was like a little love
package from people."

Kelly also put her trust in God. "You realize how much that we
don't have control," she says. "There's something bigger than all
of us in this."

Lessons from cancer

Kelly is a different mother now.

"You can't come face-to-face with a miracle like this and not be
changed," Kelly says. "I think it teaches you the idea of serving.
Surrendering. You really appreciate those moments, those days,
those times that you have, because you know that they're so
fragile."

Does that mean she's a parent who soaks up every moment with her
kids?

She wishes.

"I still get mad at the boys because they're supposed to be in
bed and I'm tired and they're tired, that's my meltdown period. And
I think, 'I should be beyond all this, who cares?!' but, you know,
it still happens," she laughs. "Sometimes the bigger things are
easier to deal with than the little things," she adds, saying
colicky babies and temper tantrums can test a parent's might as
much as cancer. "It's still you there, trying to deal with it."

The family's ordeal also has taught Kelly to appreciate her boys
more.

"You do appreciate the gift that your children are," she says.
"You also learn to see them as a gift and see their uniqueness,
their strengths, their weaknesses, their abilities, as the gifts
that they are."

How to help
Each time our family cracks open a soda, it's hard not to think of
our neighbor, Bobby Johnson.

He's an avid collector of pop tabs for the Ronald McDonald House
Charities, which recycles the tabs to support its operations.
(Since 1987, the charity has collected and recycled more than 400
million pop tabs, generating more than $4 million.)

While the Johnson family didn't stay at a house, parents Kelly
and Bob told their son Bobby, a brain cancer survivor, about the
program and how it helps families with sick kids. "It really struck
a chord with him," Kelly says. "He's been passionate about
collecting tabs ever since."

In fact, he dressed up as a pop tab for Halloween in 2005.

Want to help?

• Pull off tabs from soda cans, vegetable and soup cans and pet
food cans. (Tip: move the tab back and forth and it will fall off
easily.)

• Drop off tabs wherever you see the cardboard House container
(find them at your local McDonald's, grocery, bank, etc.)

• Spare your spare change to Ronald McDonald House Charities at
McDonald's restaurants (or make a direct donation at www.rmhc.org).

Jill S. Browning lives in Downers Grove with her husband and
6-year-old triplets.